all good things are wild and free

I have a chronic illness and it’s called sadness

I had big plans today. HUGE plans. I had decided on them last night while I was in my bed, crying. I thought to myself, “Tomorrow I’m going to do nothing but stay in bed all day long.” I got up this morning, hopped in the shower and just as I was getting dressed for my “big day,” I got a text message from Stacy. It simply said, “Can you meet for breakfast?” I didn’t even hesitate as I texted her back, “Yes,” and plans were made. A year ago, I would have told Stacy in no way shape or form, could I possibly meet her for breakfast. That was the state of mind I was in last year. Things are different now.

I met up with Stacy and as soon as she sat down she said, “Fernanda is meeting us, too.” “Great!” I said. Even though she just had surgery, she still was popping in for our little breakfast which I was surprised by, but shouldn’t have been since her nickname should be freaking Superwoman. I sat and caught up with my friends and our breakfast ended up turning into a two-hour meal/discussion/sob fest. I listened as Stacy and Fernanda talked to me about some things they know I am struggling with. Mostly about the last week or so of your life. They told me they know how I am regretting not having you die in our home and I listened as they both explained to me why it was that we were encouraged to take you to the Ryan House. I hadn’t really ever heard this from them before. They talked about how scared they were that you were going to die this awful, painful death by basically drowning on your own blood. How for many kids that die of Neuroblastoma, this is what happens. It is usually a very painful and awful death. They talked about how they didn’t want your blood, all over our house. I listened to them, understood and now I feel like I can let this little piece of my guilt go. I do not blame anybody for pushing us to take you there. I know my friends only had our best intentions at heart as they always do. We all sat and cried talking about this. I said something about I only have the guilt because you begged me to go home and I feel like I didn’t answer your one little dying wish. Nobody knew you were going to die so peacefully the way you did. Nobody knew you were just going to fall asleep. I looked up at the girls and one of them, I can’t remember who goes, “But Maya, don’t you think Ronan’s home was wherever you were?” I nodded my head in response. We talked about some more things as we continued to sit and cry at the table.

I told them about the chapter for this book that I am supposed to be working on. I told them about what it is I was thinking about writing about. I watched as the color drained from Stacy’s face. “You can’t write about that right now. You are going to give birth soon. You cannot write about that.” Fernanda’s eyes welled up with tears. “You need to listen to your gut, Maya, but do you really want to write about that, now?” I told them I was having a hard time working up the courage writing about this part of my life, but it was the only thing my mind kept going back to. I listened to them both and their advice. I left our breakfast still unsure about taking on this chapter but I could not think of anything else that I could connect with to write about. I ran a couple of errands after breakfast and cried almost the entire time in the car. I came home and made a decision to head up our mountain to go hiking today. I can’t take another day of not doing a thing, exercise wise. I put on my clothes, threw on your little backpack and off I went.

I didn’t wear my headphones or blast my music while I hiked. I listened to my head instead. I listened to you. I took it slow up the mountain to keep your Poppy sister safe. I felt my head become less foggy. It was as I was coming down the mountain that I decided what I am writing my chapter about. It suddenly came to me so clearly just the way things always do when I am outside, exercising, and listening to myself and you. It felt so good to be free and clear with my thoughts flowing non-stop. I’ve said this from day one; nothing good will ever come from me hiding in my bed. I cannot change the world this way and for sad as I am and for as much as I want to hide, I can’t. Because if I hide then I die and I really don’t want to die anymore.

I said something to your Sparkly yesterday that has been bugging me to pieces. I told him I was working on being less sad. Saying that left a bad taste in my mouth and I have been mad at myself ever since. I texted him today as I was going up the mountain and told him that I had decided that me saying I was trying to be less sad, was bullshit. That my sadness is like a chronic illness. It’s something I’ll always have and it will always be a part of me. I have to accept it, stop trying to change it, and learn to live with it. I will never be able to get rid of my sadness but I can learn to manage it. Managing it for me will come in many different forms and I am slowly figuring out the “medication” I need to treat my sadness. No, not real medication. My medication. The things that work for me and help me through this life. Things like exercising, nature, writing, helping others, surrounding myself with the kind of people who build me up, not beat me down, and trying to live a life you would be proud of. That’s my prescription. It may not be prescribed by a real doctor, it may not work for everybody, but it works for me and that’s what I’m sticking to.

I’m tired from today and the hiking wore me out, but it made me feel good as well. I’ve missed our little mountain so much. I see Dr. Schwartz tomorrow so she can check up on this baby sister of yours. Please keep her safe and sound for me, Ronan. I miss you. I love you. I hope you are safe. Sweet dreams my spicy little monkey.

xoxo

I have a chronic illness and it’s called sadness was last modified: February 26th, 2013 by rockstarronan

27 comments

So im reading ur blog tonight blown away as usual crying noddin my head atthe wisdom and asi finish i scroll down. Maybe there will be an secial maya extra like a website i can devour a funny clip or song that will get stuck in my head ( seriously its been over 6 months and every. Single. Day. Taylors ronan is in my head) and i see ur hits. 11 and half million. Over 11,500,000.00!!!! Seriously girl?! There are no words. I cant even imagine…..know this if u never do another thing u have already don more than most people will ever get a chance to in their life time.
Lovelovelove

I’m so glad for that you have such awesome friends. I hope you got a little clarity and feel even a teeny bit better. I’m also glad you hiked..you realize that “meditation” is your “medication”, keep treating yourself. You are doing great. Keep that sweet head up. You are amazing…you have held yourself high through all this shit..and that really does take a remarkable spirit. So yes, you definitely are amazing.

Ok Little Miss Mother Wife Cancer Defeating Inca Badass Extraordinaire 🙂 don’t be so hard on yourself or the beautiful words that come out of your mouth or onto the screen….you use and say what feels right in the moment and you always do your best and try to stay true to yourself and your Ronan! “I am working on being a little less sad”…while you did perfect it the next go around, I bet Sparkly knew what you meant! I know you will always be sad, how could you not be. I also think, wow….you live and breathe this nightmare every day and you didn’t say it quite right, imagine us very lucky but giant morons who have not experienced the loss of our precious child; we certainly fuck it up a LOT when we say things to try to help! Love to you, always.

When I was pregnant, I too was in a position to do some very hard things…say hard things and write hard things. Something about the little in my tummy made me fierce. She’s making you fierce…and now it’s her turn to help you do something for yourself and for him.

I have no idea if you read or see comments. In case you do I want you to lnow that your honesty is refreshing. As Mother to 4 children (one of which is with the Angels) the worst
thing I heard was “chin up, God gave you 3
more babies to raise”. I often wonder if these folks have NEVER experiences loss or if they are just idiots!!!!! My baby is dead, my parents are dead, I have no siblings … yet most say but you are so blessed with a great husband. DID I SAY I HAVE A BAD HUSBAND? NO! I am blessed but my heart longs for my baby AND my parents (they left in their 50’s – too young) sorry I ranted. I said all of this just to say thanks for being REAL!!

Your idea of medication is wonderful:) I think you have the right idea! I can’t wait to read your book and support you even further. You are wonderful inside and out. Love you Maya. I hope you have a great appointment and see little Poppy moving all over the place. She will be magical. Can’t wait to see all her pics:)

Your my HERO Maya ! Your just perfect, true, amazing !
I think, miss and love Ronan every minutes of every single day ! … Shure he is so proud of you ! Can’t wait to have some news of little Poppy ! Take care … and be proud of everything.
Lots of rolove

I have the sadness chronic illness too. Sadness is just a part of me since Jake and then Sawyer died. Living in a world without your child/children is sad there is no way to change that – but as you wrote it can be managed.

I try to accept the sadness as part of me instead of getting over it or curing it (because there is no getting over or cure for your dead child/children). I try to take the same prescription as you but sometimes I forget and the sadness takes over so thank you for the reminder.

So glad that Stacy and Fernanda are with you. Good luck at the doctor’s appointment today.

Thinking of you and praying for you always. I feel like any attempts at offering words of wisdom are pretty feeble ones these days, so here’s just a reminder that you are on my mind. AND that I will live today appreciating and not whining! 😉 xo

Every time I read, I think “This is my thoughts written…” and you aren’t me… and I don’t have a little ‘poppy’… but I absolutely get it. I agree 100% that this pain and hurt and sad is our forever, it is a part of us… how else could it be? Honestly when you have this amazing child that is a part of you and now they are gone, how can our forever not hold them in some way? I am stuck in the same place as you lately too… all I can see and remember were moment of the end of Madeline’s life… I wish I remembered her heartbeat before… or what her skin felt like before she was gone… I can’t remember her smell. I do remember her laugh and hear it sometimes in my brain… it was lovely. I miss the memories of her… but I think when my brain can digest and put her death in it’s spot it will let me reach into the file of her life… I don’t know.
Anyway… man I am wordy… I just feel the same in so many ways. Enjoy the hiccups dear… someday I will feel those too…
Erin

Taylor swifts song ,Ronan, is stuck in my head.i listen to it almost every day with my best friend. I also read your blog every day.
Some kids in my school talked to our priceable about having a fundraiser to help kids with cancer. That’s now what were doing. Me and my friends are going to ask them if they can tell the school(on the loudspeaker) Ronan’s story.

Maya, Ronan as you know, was born with unforgetable beauty. But it is your unselfish love only a mother can have that has allowed us to see the beauty on the inside everyone in your family has. You are a beautiful person and I am so glad you are Ronan’s mommy. We all love Ronan who would’nt but only you could have loved him the way he needed. You loved him the best. I hope Poppy’s appointment went well today and thank you for allowing me to get to know you and your beautiful babies. Because of you when somthing is difficult, and it seems the universe is being cruel and unfair to my “special” boy either me or my husband stick out a middle finger and yell “Yo Easter Bunny!!!! I know it doesn’t fix it but we laugh so hard we almost pee. That picture cracked us up and tell Woody Thank you because Easter will be all about Food this year. It was genius. I am glad I found your blog and continue to pray for all of you. Sleep well.

I can’t believe you went hicking,that’s incredible for you to do that while being pregnant,for sure the secrets of your strenght went to express again;i know your heart is full of a million little treasures that will lead you to your own way of healing.I hope you could find some peace hicking and feel some connection.Whatever you do for Ronan ;we will always be proud of you,even the smallest things are a blessing.Feeling Ronan’s love,always.Sending love and hopes for you and your wondeful family.

it is s difficult to hear that you have guilt. i wish you could see that every thing you did for ronan was perfect and the best that you culd do… you were with him every single step of his treatments and battled them WITH him. he was never alone, you played with him, sang to him, slept beside him, cuddled him, and helped him hold on to his innocence the best that you could… even thinking back to his army guy haircut you kept up the facade to him that you were excited about it and i swear to god i stiill dont know how you managed to smile and laugh with him, but you did it for him. and yes the cancer was a shit head and aggressive and the treatment was almost worse than the disease but you did it with him and he had his mama with him and thats the most important thing.. he loved you more than anyone else in the world and you were with him every step of the way. well done maya, you handled it all so beautifully and gracefully i think you were so calm in front of him and that made him calm and relaxed! he battled his way thrugh cancer so well, better than most adults, but he didnt seem afraid because you didnt let him think you were..

i hope you are ok maya. think abut you and ro constantly. went to bed crying again last night thinking about him and how much you must miss him.. xxxxxx

Last night my 7 year old daughter came running up the stairs to tell me about this song ‘Ronan” she had heard. She wanted to know more about the little boy in the song. So, we Googled it and was led to the video of Taylor singing the song and to this website. My daughter wanted me to read some of your blog to her, she wanted to know what happened to Ronan. So for two hours last night I read to her from this special website you have set up here for your little boy. When I finished reading to her she just wrapped her arms around my neck so tight and the tears just fell. At bed time she insisted that she say prayer for you and Ronan and then she thanked God for sending you Taylor.

I want to say thank you, I believe that my daughter and I got to know you and Ronan last night and we are both better people today because of you both.

Please stay strong, and know that as long as you keep him in your heart he is not really gone.

And I wanted to address your guilt issue if that is ok….you have to roll with it, No one can take that feeling of guilt from you anymore than anyone could take the pain from you but in time, as the pain becomes more manageable so will the guilt. I say this as person who has not endured what you have endured with Ronan but I have endured the loss of a son. My little boy, Johnny died at birth in 2003, a little boy who was born too soon. I remember so many things I have beat myself up for concerning his death. Even though the doctors say it wasn’t my fault, I still to this day have those feelings at times. But …it is manageable now you know why? Because everything I did for my son while pregnant with him was done out of love just as everything you have done for Ronan has been done out of love. You kept him at the Ryan House because you wanted him to be cared for if he needed it in his passing, you did what you thought was best for him and that is your job as Mommy, to do what is best for your kids. I would have done the same thing. I would have been terrified to bring him home and not be able to address pain issues if needed. You are Ronan’s Hero, Wow Maya, you are my Hero as well.

Please know we are walking through this journey with you, holding the light so you can find your way.

I’m so glad to read about your letting go of some regret. Regret is the hardest thing to manage and more so when it’s about the people you love. My mom works at a hospice program and has told me many stories of families who lost their loved ones too soon, and are left with only memories and regrets. None are as inspiring as yours of course but still, it’s a sad world. I mention this because of the recurring dilemma of where to go for the final moments. I don’t know much about the Ryan House, but I think you should keep letting go of your regrets of where Ronan went to sleep. He wouldn’t want you to linger on that, or feel guilty about not being able to protect him. Because you were there with Ronan, I’m sure that he felt safe and knew how much he was loved. You did everything you could and he knows that so you can stop blaming yourself. It seems like you’re doing better, and with your lovely group of friends I hope you stay well. I also hope that if you read this, you know I said everything with the best intentions with no intent to offend you or stir up unhappy memories and thoughts. I think you and Ronan are so inspiring and I truely believe you are changing the world. So thank you and lots of good wishes to you and your family from a girl in South Korea.

I’m glad you have found your own medication. I’ve been reading your bogs consecutively for a few nights now. I’ve cried, no I’ve wept, but I have also learned, and most importantly fell in love. I fell in love with your son and you. You’re such a beautiful and strong mom. I’m a young mom and I only hope to be a fighter for my two sons the way you are for beautiful Ronan. I’m glad you’re writing and can’t wait to read your book. You and Ronan have changed and matked my life forever. God bless you and your family. Lots of love <3

I just arrived in Az and we are hiking Camelback today. Hopefully this doesn’t come off as creepy but I totally hope I see you! Although it wont be hot enough to be considered an inferno hike. 🙂 Thinking of u, take care.

Maya, I think of you and Ronan every. Single. Day. I can’t wait to read your book. I read from where he died until present, but this past week I read from the beginning of the blog. I’m sad. And happy cause he was so beautiful. And your relationship with him was/is beautiful. My heart hurts for you dear. Your in my daily thoughts. Xoxo